Tuesday, March 26, 2013

Are You Feeling Brave?

Of course you are -- you stopped by my blog!

I owe you an update, so here it is:

1. All neuro/medical tests (i.e. MRI, EEG, extensive bloodwork) came back normal.

2. In theory, we celebrated. In praxis, not so much. Because we continue to teeter on the edge of the abyss -- and we continue to wait for an answer. We are dumb or naive enough to keep expecting one.

3. I researched prion diseases at the macabre (but well-intentioned) suggestion of a friend. This led to alternating periods of evil dreams and wakefulness. All. Night. Long. (If you were very, very brave, Readers, you could Google prion diseases too. The worst of the lot are Kuru and Fatal Familial Insomnia, and if you read about them you would be up all night worrying you have the latter -- and being thankful you are not a cannibal so you can't get the former. These are the stuff of nightmares.)

4. Benjy's neurologist promised me he does not have Creutzfeldt-Jakob disease (I guess, given the other members of the family, you would have to call that the "good" prion disease), and proceeded to hand us off to psychiatry. It kind of felt like coming home -- in a pathetic sort of way.

5. Benjy's mental state has become such a wide, dark sea of sorrow that I fear, every day, he will slip under and I won't be able to pull him back up. I realized the other day that a sadness like this is not sustainable over a lifetime. And once again I am afraid we will not get to keep him if we can't figure this goddamn illness out.

6. The new psychiatrist prescribed a drug called Lamictal to address the bipolar disorder, particularly the overweening depression. She said, "A lot of people do well on this drug. There's only one downside: it can give you a rash. But this is not just any rash -- this rash can kill you."

7. Shit.

8.  I Googled Stevens-Johnson Syndrome (that's what a rash is called when it's a killer rash).

9. SHIT. (Warning: Wikipedia includes photos, which you do NOT want to look at. Trust me.)

10.  I slouched around and practiced avoidance for five days. Then I called Ben's PCP, who has been doctor to both my kids since babyhood. I figured she could help me decide which crappy path to take: Should I treat the depression that could kill him with a drug that could kill him? Or should I not? She explained to me that most or all of the class of drugs used to treat mood disorders can cause a Stevens-Johnson rash, so I really don't have a choice in that regard. She also told me she has several patients on Lamictal, and that they are all doing fine. The odds are low, she said, and Ben is suffering. Do a skin check every day, and if you see a rash, bring him in.

11. I decided to start him tomorrow. I am scared, but oddly enough  I am also brave. Simultaneously.

12. In the hopes that there may be some therapeutic benefit to improving his diet, I got referrals to "feeding groups" at Mass General and Children's Hospitals. These are practices within GI/Nutrition departments that work with kids who have food aversions, food anxieties, stuff like that. It has been impossible to feed Benjy properly his whole life, because of these kinds of issues. When he was younger (well, until he started Abilify), he was quite underweight, because there was very little I could induce him to eat. Now he eats plenty, but it is all TOXIC sugar, simple carbs, processed junk food. I know you are raising your metaphorical eyebrows at me. I know it should be simple: just don't buy that stuff. Well, I've tried that. It doesn't work. and these days he is RAVENOUS all the time, because his Abilify is like my Risperdal was. It's fucking with his appetite and metabolism and hijacking his body.

13. But I saved the best for last. (No irony here, peeps. You can read on without fear.) Today I wrote, for the first time in a couple of weeks. I'm not sure how I managed it but I did. I worked on an essay about me -- not about Benjy, not about disability -- and it felt GREAT.

And now I'm returning to my old coda, the one with which I closed most of my posts in the early days of this blog:

We take things one day at a time around here. And we shall see what tomorrow brings.

Monday, March 18, 2013

Elie and I Are Gonna Change the World, Apparently

Last night I dreamed I was sitting around my dining room table with Elie Wiesel, and I asked him about the state of this crazy world of ours.

"What do YOU think?" I said.

I wish I could remember his answer. I do remember he asked me how my new meds were working out, though.

That was nice.

Two Narratives of Decline

It's been a while since I've blogged. There are a few reasons for that.

Benjy is not doing well. We have been inches away from another hospitalization. On the other hand, his EEG was normal, which is ultimately a good thing. When I first got the news it felt like I'd been kicked in the gut. I wasn't expecting that feeling, but there it was. I guess I'd hung my hopes on something that wasn't psychiatric.

I supposed I'd fooled myself into thinking that epilepsy was easy, something you just gave your kid a pill for once a day and it went away. And then in Benjy's case all the other stuff would go away too, and I'd have the boy back I once knew -- the boy I sometimes wrote about here, who may at times have wanted to die, but who was sometimes funny and bright and clever and made us all laugh.

But that was dumb. Because who ever said epilepsy was easy, or easily treated? My apologies to all the folks with seizure disorders out there, and their families, for that assumption. It was just a desperate hope. And anyway, all this stuff started long before the seizure-type symptoms reared their fearsome heads.

So yes, it is GOOD that my boy does not have yet another diagnosis to contend with. He contends with enough crap.

But we are trying to wrap our minds around what he does deal with, every day. and trying to help him get through every day. and trying to get through those days ourselves. And that takes a lot of energy. Sometimes writing, even for the blog, is the last thing I want to do.

There's been another thing eating at me recently, worrying me and taking up way too much real estate in my already over-crowded brain. (When I think of all the activity up there -- and I'm not talking about staggering works of genius here -- the image that comes to mind is Tokyo at night. And that is not what I would prefer, at fifty years old and in a state of near-constant FATIGUE.) That thing is my own disability, which has been much on my mind these days. I have mentioned it here on occasion but I don't write about it much.

This Tourette's may finally have gotten the better of me. For most of my life I did not even think of it as a disability. You were disabled, or so I thought, if you were in a wheelchair. Or blind. Or deaf. Or what we then called "mentally retarded." Now, of course, it is so much better -- and often, if not always, more accurate, to think in terms of "differently abled," and to use language like "intellectual disability."  And just as the discourse on disability has evolved since I was a kid, so has my thinking about myself and my Tourette's -- but inversely.

The thing is, while I struggled in school, socially and, while I was doped up on Haldol (AKA The Worst Med In The World) as a teen, cognitively, the disorder didn't hold me back too much. I've had two marriages, and number two is really pretty awesome. Did a PhD. Realized a long-held dream to become an author (that's just what I predicted I was going to be in my high school yearbook, btw). I did not have the academic career I had hoped for, and that was partly due to the pull of Benjy's needs and partly due to an impossible job market. At the time the plan for a tenure-track position went awry my Tourette's was not wreaking TOO MUCH havoc, although I guess I had started on my path toward unsustainable weight gain on Risperdal -- more on that later.

Well, in the past year and a half, the Tourette's has gradually gotten the upper hand over me. Because in defiance of the usual course of events, MY TS symptoms have actually become more severe with age. (This may be because the stress in my life has increased a thousandfold with Benjy's progressive illness, and stress is a well-known exacerbater of tics.) And here's the kicker: over the past thirty some-odd years I have tried virtually every medication used to treat this damned disorder (or at least every class of medication), and EVERY SINGLE ONE has had crappy, unsustainable, in some ways disabling side effects.

I am now on what I believe is my last-chance med (I WILL name you, you monster. Topirimate). I had such high hopes for it. The best thing about it, in my mind? It was going to undo the damage done by that dastardly Risperdal over the past 12 years and take off the 40 extra pounds I was dragging around.

It's working in that respect. Wanna know how? BY MAKING ME FEEL LIKE UTTER AND COMPLETE CRAP.

Actually I lost the first 18 pounds in two and a half weeks simply by trying my second-to-last chance drug and having a bad reaction to it -- I may have titrated up too fast. I could not eat or drink much for that whole period of time. (I wrote about this a while back but am too lazy to link to it -- sorry!) I've probably lost eight more pounds in the last two and a half weeks. As I said to my beloved sister-in-law recently: Who knew you could be almost dead and look so good?

So, the weight loss is great, but the GI distress, whopping headaches, and cognitive blunting are a pretty high price to pay. There's still a chance they will go away, but what if they don't?

Then I have to make a hard choice. Hard, because these tics are not easy to live with. (That is the understatement of the year.)

And no, I do not swear (unless I want to -- which, actually, is not infrequently ;). I don't have that particular kind of tic, coprolalia, which is always dramatized on TV, as if that alone is what Tourette's is. That involuntary swearing tic is actually rather rare, as far as I know.

But I do have vocal and motor tics that can be uncomfortable, both socially and physically (its TIRING when your body is constantly in motion!). Sometimes I can't type on a keyboard if my hands are very ticcy. Sometimes, when my tics are waxing, I am reluctant to go to the library. And so on. Use your imaginations.

And this, Readers, in ON MEDS. OFF MEDS, my life would be a nightmare. At this point, when every day is stress-filled, I do believe I would often not be able to drive a car safely. Every so often I decide I'm better off not driving even on the meds.

So why am I spilling my guts about all this? I bet you're wondering. Maybe you're thinking you'll go find another blog now. I hope not. You know, it took a LONG time for me to be able to talk about my Tourette's. And a longer time to use the word "disability" to describe it. But right now I am thinking a lot about all of this. About whether I really have exhausted my options for treatment. And if I have, what that means for me. Scary fucking thoughts.

All along, while I was writing and speaking one narrative of decline -- Benjy's -- there was another parallel narrative of decline I was suppressing. That one was mine.

Funny how much harder it is to talk about your own decline than someone else's -- even someone you would die for.

The difference between Benjy's decline and mine is, I am suffering SO MUCH LESS. What, after all, are my physical and social discomforts -- even my functional limitations -- compared to his acute psychic anguish? His terrible, aching loneliness? I know that, whatever life throws my way, I can handle. He's not there yet, He's only twelve. He may never get there.

I know that life is worth sticking around for, even if sometimes it truly sucks. Benjy does not know that. Not yet. My life's most important work has been helping him believe it, because it will be that much harder for me to continue believing it if he is not a part of this world anymore.

So there you go. That's why I've been AWOL. I've been in Tokyo at night. And in spite of how it looks in pictures, it's not been pretty.

What prompted this (insufferably long-winded) post is that I've been invited to write a piece for the Missouri Review blog, about how disability parenting has affected/informed my writing, and my identity as a writer. and as I've been working on that essay, I've been realizing that I'm only telling half the story if I exclude the story of myself. If I only write about being Benjy's mother and confronting his disabilities, and not the story of being me and confronting my own.

Well. that has opened up a big old can of worms. And you, Readers, are the first beneficiaries. You get to eat the worms first. Yum. ;)

Aren't you lucky?

Friday, March 8, 2013

This Is Me...

Right in front of a portrait of my great-aunt, Joan Delaunay. I took her last name for myself when I needed a new one, for the purposes of anonymous blogging. Then I took the first name of her sister, my grandmother Anna. And then, voila! The author of this blog was born.

Today is a straight-hair day. (I am LOVING this dry winter.) If you've been over to my website you've seen me on a curly-hair day. Just thank your lucky stars you have not seen me on a Brillo-pad day. I haven't had one of those since I was eighteen, but trust me, if you'd seen me on one of those you'd have run away screaming. People did.

Anyway, I'm out. This day was hard. Benjy told me he wants to be hospitalized again. He just cannot get a handle on his depression. I know this, of course. Not only that, I know he is bona fide bipolar -- not simply "manic because of his Lexapro." He is one-hundred percent bipolar, man. His rapid-cycling from deep depression to mania last weekend -- and guess who stayed up the whole night with him? NOT the parent with the Y chromosome -- followed by days of wild mood swings clinched it for me. Because now I know that on all those other nights over the past few years when he was agitated and couldn't sleep, pacing around the house, me following him so he didn't get into some kind of trouble, he was MANIC. He was depressed at the same time, usually, but guess what? I just learned that happens sometimes, and it's called a mixed state.

So I guess starting tomorrow I can add a few more hours to the YEARS of medical/psychiatric  research I have already conducted.

Wot larks!

Ok, I really am out, now. Lars went up ages ago. Even Saskia did. Benjy conked out an hour ago. It's only the Hellacious Hound and me down here. And he is fast asleep.

I Did It

I just came out on my website. I don't know why.

No, I am not gay. Neither am I named Anna. But you knew that.


Deep breath. That was kind of hard.

As soon as I am up to the technological challenge I will link to the website on the sidebar of the blog, too. As I recall it's really not that hard. Even Lars could do it.

There are certain ground rules here. I will not ever use the real names of my family members on this blog or in any of my writing. You could probably dig them up pretty easily if you wanted to. Please don't.

You could also easily find me on Facebook and find out that I spend a lot of time engaging in liberal rants. Even if you'd rather see pictures of what I ate for dinner -- and really, Kraft macaroni and cheese is not all that interesting* -- I hope you'll come back to the blog. Important stuff is happening here. I mean, this is where I make fun of Lars. And what could be more important than that?

You will see links to some of my published writing on my website, and learn where you can find other stuff that you would actually have to go to a library to read (I know, what a drag). Not many links yet, but more is to come, and you'll find out about pieces that are scheduled for future publication. My book is on there too -- a link to it on Amazon and other venues, anyway -- and it is guaranteed to put anyone who is not a total English geek to sleep within twelve minutes of starting the Introduction. Maybe even the Acknowledgments. If you must read it, please just take it out of the library for goodness sake.

Okay, now that I'm out I've got to figure out if things have changed. For me, for Ben. I'll keep blogging as Anna Delaunay, I think. I kinda like her. (She's named after my paternal grandma and great-aunt, actually.) But you'll know now who I really am if you didn't already.

 I guess that's just fine.

* this may be a slight exaggeration.

Thursday, March 7, 2013

Chocolate and Other Unfulfilled Desires

There is no chocolate in the vicinity of Chez Delaunay. I want chocolate. I really, really do.

But this is the least of my problems. Because I am groggy on my new meds, and the weather is bad, and Benjy is home at eleven in the morning. Today he simply could not lift his head and face the world, so I kept him home from school.

It used to be that people would be surprised when I told them he had a disability, that he was on the autism spectrum. "Really?" they would exclaim. "I would not have guessed it."

Today, anyone would guess it. Not autism, necessarily. We are not even sure that's it anymore. Certainly the Asperger's, if it even matters at this point, is secondary to a complex amalgam of psychiatric disorders.

But all it takes is a glance, a single interaction, and you know that Benjy off-kilter these days. He has declined so steeply in the past months you would not believe it. I sure don't. We hope the medical tests will help explain what the hell is going on. We are trying to be patient while we wait. Our patience is wearing thin.

Anyway, a propos of nothing, or maybe of my boredom, I did something bad today. Not something hurtful to others. Or to animals, or the environment. It wasn't unethical or illegal.

It might have been a little creepy though. And it definitely was not good for me. (On the other hand, maybe it was. Because it showed me what a horrible, horrible person I have the potential to be.)

What I did was, I cyber-stalked a woman I went to school with. I have no idea what made me think of her. I just did. She was such a nice person back then -- kind, unassuming, smart, and highly competent. I did not know her super well, but I liked her. I have not seen her face to face since the 90s, I think.

Well. You know how people who grow up in privileged families often end up making their own privileged families? Yeah. Well, this young woman was the daughter of a successful doctor father and a successful professional mother, and naturally she married a doctor. I found all of this out by Googling her. And even though she went into the same field I did, with its crap job prospects and crappier financial prospects (she DID get a job, btw, and I do know roughly what it pays -- not enough to easily get by in greater Boston) she now lives in a 1.9 MILLION DOLLAR HOUSE in one of the toniest suburbs of Boston.

I know the value of her house because I stalked her some more and found out her address, typed it into Zillow.com, and voila! there it was, in all its outrageous glory. Pictures and all.
I verily believe the  kitchen of that pile is LARGER than the entire first floor of my house.

For about twenty minutes I let her good fortune -- such as it is, and hey, how do I know her husband isn't screwing around with two nurses and a secretary? -- really make me jealous. And mad. And sad. It was mostly that damned kitchen that did it. It made me feel literally squeezed, like I couldn't breathe. I feel that way sometimes when I open a new bill from Children's or MGH and I know that whatever it is, it is  more than we have in our checking account. Or when my van starts clunking and I fear a choice between the shop and a breakdown is imminent.

I also feel that squeeze when Lars and I try to work in our kitchen together, but usually then it's not such a painful sensation. It's kind of a comical pas de deux, really. "Sorry, could I get in there?" "Oh, could you just move a bit? I need a bowl."

Because there is insufficient storage and counter space in our kitchen we've had to place a portable island right smack dab in the middle of it. We love our island but when the dishwasher door is open you can't walk through. So you have to carefully step OVER the open dishwasher door if you want to leave the kitchen and enter the dining room.

What's ironic here is that, in the small town where I grew up, I was thought to be that person from a privileged family who was going to get all the breaks. Who had everything. My father was an orthodontist, and I suppose by those small-town standards we were well-off. But my Dad was more of a dreamer and a scholar than a business man. The choices my parents modeled turned out to have more to do with pursuing emotional and intellectual satisfaction rather than financial or social status. And I think a lot of people would look at all of us now and say, "See? You did it all wrong."

But I think -- I hope -- we would all disagree.

You know, I was talking to my dear and very wise mother the other day about the lessons I've learned over the past years -- let's say over Benjy's lifetime. And the most important of them definitely has been a lesson about what is really important. (I know, I know, so cheesy. But so true.) One thing that Lars and I have made our peace with is that we will probably always live "small." Small house. Modest (or relatively inexpensive) stuff. Few if any vacations. For us, there will be no upsizing, only downsizing, and that as soon as we possibly can. We once thought we would travel. Take our kids to Europe every year. That was our dream. It meant something to us. We loved traveling, we felt there was value in it. Things to learn in seeing the world.

And there are those things! But maybe not for us. I am doing what I can to try to make a little of that happen for Saskia. We're waiting to see if she is accepted into an opera program that will take her to Italy this summer. I did what I could to get her as much financial aid as possible. Now we can only wait and see.

The only other thing I can do for her, and for Benjy, and Lars, and my parents, and the other people I love in  this world, is keep showing them how much I love them. That is the cheesy lesson I've learned. Small house, small kitchen, second-hand clothes? No problem. We've got each others' backs.